Medicare denial for Cayston

J

JustDucky

New member
I used to take Xopenex and the only reason why Medicare covered it was because of my asthma, not because of my CF....really weird. If I were on TOBI and didn't have CF, it wouldn't be covered by Medicare, even if I had bronchiectasis and cultured PA up the yin yang. "Luckily" I do have CF so that one is covered as is Pulmozyme because that is also a CF specific drug. It's nuts how medicare works and just how narrow the criteria for coverage of certain meds are. I have written letters regarding Medicare in general, specifically advocating home IV coverage. Currently, Medicare will cover IV therapy only for certain conditions and certain meds such as chemotherapy and IVG therapy. But not antibiotics...which I don't understand. Every time I get sick, I usually require IV's...which means another hospitalization in the neighborhood of 3 weeks. This year I have been in twice since November, with each hospitalization lasting about a month. Tell me if that makes sense...they will gladly cover a full hospital stay, costing around 150 grand each time (yes, you heard that right) rather than pay for IV therapy at home at a huge fraction of the cost. ???? Crazy isn't it?

Jenn
 
J

JustDucky

New member
I used to take Xopenex and the only reason why Medicare covered it was because of my asthma, not because of my CF....really weird. If I were on TOBI and didn't have CF, it wouldn't be covered by Medicare, even if I had bronchiectasis and cultured PA up the yin yang. "Luckily" I do have CF so that one is covered as is Pulmozyme because that is also a CF specific drug. It's nuts how medicare works and just how narrow the criteria for coverage of certain meds are. I have written letters regarding Medicare in general, specifically advocating home IV coverage. Currently, Medicare will cover IV therapy only for certain conditions and certain meds such as chemotherapy and IVG therapy. But not antibiotics...which I don't understand. Every time I get sick, I usually require IV's...which means another hospitalization in the neighborhood of 3 weeks. This year I have been in twice since November, with each hospitalization lasting about a month. Tell me if that makes sense...they will gladly cover a full hospital stay, costing around 150 grand each time (yes, you heard that right) rather than pay for IV therapy at home at a huge fraction of the cost. ???? Crazy isn't it?

Jenn
 
J

JustDucky

New member
I used to take Xopenex and the only reason why Medicare covered it was because of my asthma, not because of my CF....really weird. If I were on TOBI and didn't have CF, it wouldn't be covered by Medicare, even if I had bronchiectasis and cultured PA up the yin yang. "Luckily" I do have CF so that one is covered as is Pulmozyme because that is also a CF specific drug. It's nuts how medicare works and just how narrow the criteria for coverage of certain meds are. I have written letters regarding Medicare in general, specifically advocating home IV coverage. Currently, Medicare will cover IV therapy only for certain conditions and certain meds such as chemotherapy and IVG therapy. But not antibiotics...which I don't understand. Every time I get sick, I usually require IV's...which means another hospitalization in the neighborhood of 3 weeks. This year I have been in twice since November, with each hospitalization lasting about a month. Tell me if that makes sense...they will gladly cover a full hospital stay, costing around 150 grand each time (yes, you heard that right) rather than pay for IV therapy at home at a huge fraction of the cost. ???? Crazy isn't it?

Jenn
 
J

JustDucky

New member
I used to take Xopenex and the only reason why Medicare covered it was because of my asthma, not because of my CF....really weird. If I were on TOBI and didn't have CF, it wouldn't be covered by Medicare, even if I had bronchiectasis and cultured PA up the yin yang. "Luckily" I do have CF so that one is covered as is Pulmozyme because that is also a CF specific drug. It's nuts how medicare works and just how narrow the criteria for coverage of certain meds are. I have written letters regarding Medicare in general, specifically advocating home IV coverage. Currently, Medicare will cover IV therapy only for certain conditions and certain meds such as chemotherapy and IVG therapy. But not antibiotics...which I don't understand. Every time I get sick, I usually require IV's...which means another hospitalization in the neighborhood of 3 weeks. This year I have been in twice since November, with each hospitalization lasting about a month. Tell me if that makes sense...they will gladly cover a full hospital stay, costing around 150 grand each time (yes, you heard that right) rather than pay for IV therapy at home at a huge fraction of the cost. ???? Crazy isn't it?

Jenn
 
J

JustDucky

New member
I used to take Xopenex and the only reason why Medicare covered it was because of my asthma, not because of my CF....really weird. If I were on TOBI and didn't have CF, it wouldn't be covered by Medicare, even if I had bronchiectasis and cultured PA up the yin yang. "Luckily" I do have CF so that one is covered as is Pulmozyme because that is also a CF specific drug. It's nuts how medicare works and just how narrow the criteria for coverage of certain meds are. I have written letters regarding Medicare in general, specifically advocating home IV coverage. Currently, Medicare will cover IV therapy only for certain conditions and certain meds such as chemotherapy and IVG therapy. But not antibiotics...which I don't understand. Every time I get sick, I usually require IV's...which means another hospitalization in the neighborhood of 3 weeks. This year I have been in twice since November, with each hospitalization lasting about a month. Tell me if that makes sense...they will gladly cover a full hospital stay, costing around 150 grand each time (yes, you heard that right) rather than pay for IV therapy at home at a huge fraction of the cost. ???? Crazy isn't it?
<br />
<br />Jenn
 
B

benthyrdeeders

Guest
Yes, I totally agree. Medicare needs to be revamped. My at home IV therapy saves thousands, but Medicare refuses to cover it, so I'm covered by a home program at our hospital. Luckily I have not had to do this for two years....however, since I'm no longer able to tolerate TOBI, I suspect I will be admitted soon.
I will try Cayston.com. Foundation Care said they were going to appeal Medicare's decision, but I'm doubtful I will have any luck there. I certainly can't afford this on my own, never mind a co-pay.
I was doing so well on the Vertex study too...now that it's over I'm headed down the creek without a paddle it seems.
 
B

benthyrdeeders

Guest
Yes, I totally agree. Medicare needs to be revamped. My at home IV therapy saves thousands, but Medicare refuses to cover it, so I'm covered by a home program at our hospital. Luckily I have not had to do this for two years....however, since I'm no longer able to tolerate TOBI, I suspect I will be admitted soon.
I will try Cayston.com. Foundation Care said they were going to appeal Medicare's decision, but I'm doubtful I will have any luck there. I certainly can't afford this on my own, never mind a co-pay.
I was doing so well on the Vertex study too...now that it's over I'm headed down the creek without a paddle it seems.
 
B

benthyrdeeders

Guest
Yes, I totally agree. Medicare needs to be revamped. My at home IV therapy saves thousands, but Medicare refuses to cover it, so I'm covered by a home program at our hospital. Luckily I have not had to do this for two years....however, since I'm no longer able to tolerate TOBI, I suspect I will be admitted soon.
I will try Cayston.com. Foundation Care said they were going to appeal Medicare's decision, but I'm doubtful I will have any luck there. I certainly can't afford this on my own, never mind a co-pay.
I was doing so well on the Vertex study too...now that it's over I'm headed down the creek without a paddle it seems.
 
B

benthyrdeeders

Guest
Yes, I totally agree. Medicare needs to be revamped. My at home IV therapy saves thousands, but Medicare refuses to cover it, so I'm covered by a home program at our hospital. Luckily I have not had to do this for two years....however, since I'm no longer able to tolerate TOBI, I suspect I will be admitted soon.
I will try Cayston.com. Foundation Care said they were going to appeal Medicare's decision, but I'm doubtful I will have any luck there. I certainly can't afford this on my own, never mind a co-pay.
I was doing so well on the Vertex study too...now that it's over I'm headed down the creek without a paddle it seems.
 
B

benthyrdeeders

Guest
Yes, I totally agree. Medicare needs to be revamped. My at home IV therapy saves thousands, but Medicare refuses to cover it, so I'm covered by a home program at our hospital. Luckily I have not had to do this for two years....however, since I'm no longer able to tolerate TOBI, I suspect I will be admitted soon.
<br />I will try Cayston.com. Foundation Care said they were going to appeal Medicare's decision, but I'm doubtful I will have any luck there. I certainly can't afford this on my own, never mind a co-pay.
<br />I was doing so well on the Vertex study too...now that it's over I'm headed down the creek without a paddle it seems.
 
W

woobie123

New member
Jenn, What state do you live in? in PA it shows Colistin as a specialty drug and the copay is 33% of the cost of the drug and the cost for generic colistin is $2,700...That puts us in PA in the donut hole the first month and then after we get out of the donut hole we still have to pay 5% of the cost of the drug. This is how I understand it and I am not going to be able to afford this when I become medicare eligible...Does anyone out there in PA know any different? I am thinking I will have a medicare advantage plan but no other coverage. I keep being told most people with cf that are disabled are dual eligible for medicare/medicaid. Is that really the case. Thanks for any info.

Colleen
 
W

woobie123

New member
Jenn, What state do you live in? in PA it shows Colistin as a specialty drug and the copay is 33% of the cost of the drug and the cost for generic colistin is $2,700...That puts us in PA in the donut hole the first month and then after we get out of the donut hole we still have to pay 5% of the cost of the drug. This is how I understand it and I am not going to be able to afford this when I become medicare eligible...Does anyone out there in PA know any different? I am thinking I will have a medicare advantage plan but no other coverage. I keep being told most people with cf that are disabled are dual eligible for medicare/medicaid. Is that really the case. Thanks for any info.

Colleen
 
W

woobie123

New member
Jenn, What state do you live in? in PA it shows Colistin as a specialty drug and the copay is 33% of the cost of the drug and the cost for generic colistin is $2,700...That puts us in PA in the donut hole the first month and then after we get out of the donut hole we still have to pay 5% of the cost of the drug. This is how I understand it and I am not going to be able to afford this when I become medicare eligible...Does anyone out there in PA know any different? I am thinking I will have a medicare advantage plan but no other coverage. I keep being told most people with cf that are disabled are dual eligible for medicare/medicaid. Is that really the case. Thanks for any info.
<br />
<br />Colleen
 
P

PeteRose

Guest
I just event through this, cancel the script through Foundation Care, they were so un-helpful. Have your doc order through CF Services Pharmacy, they are miracle workers. I just got my Cayston with $0 copayment

Rosie 49 with cf
 
P

PeteRose

Guest
I just event through this, cancel the script through Foundation Care, they were so un-helpful. Have your doc order through CF Services Pharmacy, they are miracle workers. I just got my Cayston with $0 copayment

Rosie 49 with cf
 
P

PeteRose

Guest
I just event through this, cancel the script through Foundation Care, they were so un-helpful. Have your doc order through CF Services Pharmacy, they are miracle workers. I just got my Cayston with $0 copayment
<br />
<br />Rosie 49 with cf
 
J

JustDucky

New member
I live in NY, from what I heard though, Cayston may be added to the Medicare part B formulary as early as January. The reason it wasn't covered at the time was because of the new FDA status it has for PA. TOBI went through the same hoops, hopefully Cayston will be on that formulary soon! I will be keeping my eyes peeled, so will my pulmo. As soon as it is covered by part B, I will be getting my Cayston <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I live in NY, from what I heard though, Cayston may be added to the Medicare part B formulary as early as January. The reason it wasn't covered at the time was because of the new FDA status it has for PA. TOBI went through the same hoops, hopefully Cayston will be on that formulary soon! I will be keeping my eyes peeled, so will my pulmo. As soon as it is covered by part B, I will be getting my Cayston <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I live in NY, from what I heard though, Cayston may be added to the Medicare part B formulary as early as January. The reason it wasn't covered at the time was because of the new FDA status it has for PA. TOBI went through the same hoops, hopefully Cayston will be on that formulary soon! I will be keeping my eyes peeled, so will my pulmo. As soon as it is covered by part B, I will be getting my Cayston <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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